I have been living in denial, in 6 short days Ezzy will be leaving us and embarking on a new adventure…school. To help ease my mind, I decided to write a letter to her new teacher along with printing some pics of her. I have NO idea what this new chapter will mean for Ezzy, for our family, for our faith as it is tested. All that I know is that God is calling us, well, mainly me, to a really big test, a test that requires complete and utter faith and trust in him as we accept the unknown, even if we fight it the entire way. So as I am going to him, I believe he wants me to let the teacher know a little bit about her before her first day, as well as know a little about the struggle her parents are going through. I pray the letter is well received and that Ezrah isn’t seen as a burden, but instead a blessing. Because lets face it, how can you not evaluate your own personal life, witness the unexplained, or better yet smile as you spend time in her presence, Ezrah is different in so many ways. I pray that her presence in the classroom will bring joy to her new teacher and classmates.

Dear Ms. XXXX,

I am blessed, scared, ready, and utterly torn about our Ezrah attending preschool this year. As her enrollment paperwork states, she has Cystic Fibrosis (CF). This fatal lung and digestive disease doesn’t define her as a person, but unfortunately is a massive part of her daily life. I hope to share a little with you about who she is, as I am coming to grips with the fact she will be out of the safe little bubble we created for her. If you set aside the lists of accommodations she will need and look into her big brown eyes and start to get to know her, you will find that she is really good at wedging herself into your heart. She is loved by so many people who have watched her overcome things that most adults would struggle with and still manage to have more determination and tenacity to keep trucking along.

Ezrah’s personality:
-lives in the black and white, the gray is hard to understand, can’t help but think its because of her life in the hospital, constant travel to see specialists, having IV scars on her arms, a big scar across her tummy from emergency life saving surgery at 2 days old, or the fact that many days she has to suck it up and cope with her disease

-incredibly compassionate to those who are different, most likely because she is all to aware that she is different
-craves stability and control, she has meltdowns and can’t transition well, her regimen of therapies, meds, and life with CF has made her live with a list she has to check off each day. She is aware so little of her life lets her have a say, so sometimes she will fight and fight for control

-loves to laugh, ALOT, she doesn’t like to be silly, to stand out more then she does, but will find the humor in most things
-lives to dance and sing, she can memorize a song so fast!

Ezrah’s health:
-she knows the importance of good weight, she asks to eat ALL the time, her disease doesn’t allow her to digest or absorb nutrients like you and me, so she eats and eats, which will be shocking when you see how skinny she is
-because of the digestive disease her normal bowel movements many times look like diarrhea. She is on meds that make her have explosive bowel movements, which has led to embarrassment. If she says she has to go, she means it
-she has a base line cough, but when she gets sick, you will notice her wheeze and hack, its because her lungs are full of thick mucous. It would be similar to you and me breathing through a straw
-when she has to take the dreaded antibiotics and steroids, I watch my sweet little 4 yr old have “roid rage” or worse a decrease in appetite because the meds hurt her tummy
-she gets run down fast, her inability to absorb and utilize “fuel” definitely affects her activity level, if she is fighting a cold, her whole body aches from struggling to breathe normally and because of the antibiotics she is on

I have been encouraged to know parents who have entrusted their little ones with you and have shared that Ezzy couldn’t ask for a better teacher. I am excited to watch her grow and flourish outside our 4 walls, make friends, soak up all the new experiences and live life to the fullest. I know that sick kids come to school, many times very sick kids, unavoidable, but this is the scariest part for us. We were told when she was 3 wks old that we would be lucky to see her make her early 30s, that we would need to strive for optimum health in hopes she could make it to adulthood. We sadly out of fear and grief made her life dependent on the list of things she couldn’t do because of CF and didn’t focus on what she could do.

I worry she won’t advocate for herself, either because she doesn’t want to stand out or because she is finally away from her drill sergeant mom and can’t wait to try things, especially things she knows aren’t good for her.

So as the days are rapidly approaching to her new freedom, I hope that by sharing a little about who she is will help as you do what you love to do and teach little minds. Thank you for taking the time to read this. Thank you for caring for her during the upcoming school year. My husband and I are holding onto the fact that this new chapter in her life is one that she needs and we need to let go and watch her amaze us more then she has in the last 4 yrs.

Any questions or concerns please don’t hesitate to let us know!
richard 254-2535 dickharney@gmail.com
sarah 821-0204 sarahmayharney@gmail.com

Sincerely,
Sarah Harney